This is an excellent organization! I have Chiari Malformation and am working with the woman who runs this (Kolya Lynne Smith) on different ways that I can help spread awareness and education in my area. It's a very important topic for our community! They do a great job!
My girlfriend has chiari malformation. I would not wish the suffering on anyone. Its so hard to watch someone you love more then anything go through such pain everyday and know nothing can help.
This is exactly what the chiari community has been crying out for. Thank you for all your hard work and dedication to the cause.
Getting the awareness out on chiari malformation so that us that suffer can hopefully get proper medical attention. Fights hard for us to get quality care. Still wished social security would recognize it.
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Ehrick Grarions act raises desperately needed awareness for Chiari malformation. As a Chiari surgery worior I know the difficulty in getting an accurate diagnosis and plan of care it takes years, 22 in my case!! This shouldn't be happening in the USA, we are supposed to have better medical care then that!!!!!
My mother, my adult son, and I all have Ehlers Danlos and Chiari's. When I requested a brochure, I received a handful with a wonderful, handwritten note that was knowledgeable and kind.
A much needed nonprofit that is working hard to save countless lives through raising awareness to both patients and doctors
Great organization working hard to educate and bring awareness to Chiari Malformation. I have Chiari, as do my two children. It's astounding how many people in the medical field have never heard of this condition.
Ehrick Garions Act has been a great resource for me. As a scared mother of two children with chiari malformation, I learned how to help my children heal and deal with their disability.
Great organization working hard to educate and bring awareness to Chiari Malformation. I was recently diagnosed after suffering many years with painful symptoms. It amazes me how many people in the medical field have never even heard of this condition.
This organization truly cares about human life and utilizes it's funds appropriately. I have been impressed with this organization's efforts to spread awAreness and the people involved are professional and polite and very caring.
At age 52 I was diagnosed with Chiari Malformation type 1, and a long list of its sister conditions. For over a half a century I was undiagnosed, misdiagnosed, treated like a hypochondriac and drug seeker. That was 3 years ago. To this day I have been unable to get any of my needed surgeries, SSA has denied me disability benefits and Medicare for 5 years. Most of my local medical offices ask me how to spell my disorders and I have to explain to them what it is. Ehrick Garion's Act is a fantastic non-profit organization that is trying to make changes in medical education. patient advocacy, and legislation through government agencies. All of this is so needed because many people have died from this. Many of us are suffering with no where to go for help. I am so thankful for EGA!
Ehrick Garions Act is the Best nonprofit, helping the thousands of families effected by Chiari malformation And its many related conditions with the desperately needed awareness and help for this debilitating condition!
This nonprofit is honest and the leaders are tirelessly working for a medical condition that needs more attention. I find them open and very kind hearted and their ideas are innovative. The non profit has grown greatly over the past couple of years. They give me hope!!
Ehrick Garions Act is the Best nonprofit, helping the thousands of families effected by Chiari malformation And its many related conditions with the desperately needed awareness and help for this debilitating condition!
Thank you for all you do! I'm looking forward to a future where families do not have to go through what mine and other have. You are a blessing to the Chiari community.
Ehrick Garion's Act is great! They are changing lives by spreading awareness and education for Chiari Malformation. Well done!!
Very dedicated and knowledgable staff. Content of newsletter is relevant and current. I have a Chiari malformation and know how hard it is to find information on this condition.
We have lost 6 people n the month of October. This Act needs awareness to save mine and millions of people lives. I don't want to lose another friend or family member.
This act can save lives . AWARENESS MATTERS . OUR LIVES Matter We live in a great country but the medical field and medical professors are ignorant .
Amazing organization that works hard to bring awareness to a horrible condition that claims the lives of too many people. So many people suffer with this and struggle to get decent care. This includes myself and my children.
A great organization bringing forth pertinent information about Chiari Malformation - something that many are born with, but very few know about. This includes physicians that have heard of it, but know nothing of the symptoms or what direction to send their patients for help.
Ehrick Garions Act is raising much-needed awareness for the sometimes deadly condition I and many others have called Chiari Malformation. Ehrick and Garion were two young victims who inspired the creation of this great non-profit. Over the summer, people from all over the world took part in the Chiari Cream Challenge to raise money and awareness for Chiari, which will go toward the ultimate goal of educating healthcare professionals and patients about the seriousness of Chiari and to hopefully prevent deaths and ease the pain of people with this condition.
This is an awesome non profit, that is actively supporting education and research for Chiari Malformation and it's comorbidties. It currently is considered a rare disease, and not well known, taking an average of 4 yrs and mutiple doctors until diagnosis and or treatments. In the meantime patients are dying and suffering from improper treatments.
This organization is much needed for Chiari Malformation patients such as myself. Many of us are misdiagnosed, undiagnosed, blown off by physicians who are not educated in Chiari and its related disorders. Many of us are considered crazy, hypocondriacs or pill seekers and are not believed. This has happened to me for a half a century and I have been unable to get the surgical treatment I so desperately need. There is no cure currently. The only treatment is brain surgery. It damages nerves, and many Chiarians are dying from this terrible and debilitating condition. The EGA is trying to push for education in the medical community, and to lawmakers and government agencies to become aware, advocating for people who suffer from Chiari Malformation and their families.
Erich Garions Act advocates for better care and increased funding for medical research and care of those of us who live with Chiari.
Ehrick Garion's Act is awesome! They are changing lives by spreading awareness and education for Chiari Malformation.
It took 5 years of going to every specialist around to be told that there was nothing wrong with my daughter. It took an overdose of Red Bull for the hospital ER doc to recognize that there was a problem and referred us for an MRI of the brain which lead us to her neurosurgeon that told us there was a herniation which was Chiari Malformation. 5 years is a very long time for anyone to suffer the symptoms to be told that a psychiatrist would be beneficial because the symptoms/pain are all made up. A great big THANK YOU to EHRICK GARIONS ACT for getting the word out there and educating Docs that have no idea what this is. It isn't as rare as people might think.
Helps to raise awareness of serious neurological disorder Chiari Malformation. It is greatly needed in medical community.
Ehrick Garion's Act is amazing. The people have so much passion for helping the Chiari community and spreading awareness. The information they provide and the resources they have are great tools for newly diagnosed Chiarians. They are changing and possibly saving peoples lives! I am so blessed to have come in to contact with them and to have the information they provide.
This a fairly new and exciting non-profit organization. Aimed at increasing education and awareness about Chiari Malformation, a frequently occurring (at least 1/1000, some estimates are 1/100), but often misunderstood and too often fatal condition which has many life-threatening complications. Chiari Malformation is a disorder where the lower portion of the cerebellum is often compressed and is forced down through the foramen magnum (the bottom opening of the skull where the spinal cord exits).
The focus of the group is to get legislation passed that will facilitate education of the medical community, government agencies, and the public about appropriate diagnosis, treatment, and functional implications of this condition. Unfortunately, many physicians know little about or use outdated information regarding Chiari Malformation, resulting in increased suffering, disability and even death. Although there is no cure for this condition, proper treatment by a neurosurgeons and other physicians can often prevent needless deaths and minimize disabling complications.
Ehrick Garion's Act is staffed entirely by volunteers, so all funds raised go straight to the goal of getting this law passed. Officers and volunteers are all well-acquainted with Chiari Malformation, contributing a variety of expertise related to Chiari Malformation. Many have this condition. The steps to accomplish this mission are difficult, and will take time, but there is a clear set of goals designed to get the job done. Beginning with the use of social media, and expanding into an on-the-road campaign to visit with legislators, medical professionals and hospitals, medical schools, public schools and meeting with and personal advocacy along the way for those with Chiari will be a powerful tool in the plans to make this act a reality, as well as being valuable accomplishments in and of themselves.
In my mind what makes Ehrick Garion's Act deserving of recognition is that it has a clearly defined mission, all funds go toward meeting these specific goals, and the level of expertise and caring embodied by the leadership and volunteers. It addresses a little known but fairly common condition which has been underestimated on many levels. The end goals of this organization will not only improve but even save lives of countless individuals who otherwise might flounder in a medical system that is in need of education and tools to improve diagnosis and treatment.
This act can help save lives, and help spread much needed awareness for Chiari Malformation. Much of the medical community is uneducated or undereducated, using outdated medical standards to treat a serious brain/skull condition that an estimated 1/110 people suffer from. Education and advocacy are what Ehrick Garion's Act is all about.
A hardworking non-profit; driven to give knowledge to doctors about Chiari Malformation to help save lives. There are a lot of Chiari Angel's and Warriors. Ehrick Garions Act is putting there foot down, taking step by step to help save lives and also talk to those in America who suffer from Chiari to let them know they are not alone.
This group is bringing attention to a much needed medical issue that is usually found autopsy as cause of death. I am so thankful that it is educating even the medical community to this terrible malformation. Arnold Chiari malformation is a deadly medical problem for children to adults. And more need to know about the risks problems and needs of those diagnosed with it.
I have chiari malformation and believe there needs to be much more education and awareness for this and it's related disorders.